Friday, May 18, 2012

One more reason chronic illness sucks

Now before I start, don't get me wrong. I wish people didn't have to be sick, injured, or anything else of the like. I wish that we all didn't have to go through the pain of it, emotionally or physically. And when people get well, it's a great thing.

But for EDSers, that's not something that we see much of. We get symptom relief, and remedies for some quirkier issues, but we're stuck with it for the rest of our lives.

When I went on sick leave in January and February of this year, I came back only to find out that a coworker had also been gone the same time. She was diagnosed with lymphoma and underwent a lot of medical crazy, spending very little time at work in the process. She's going through chemotherapy now. And halfway through her treatment, she's doing AMAZING. She's feeling better, off a lot of the meds she was on, her hair is growing back (though she's worn a wig/weave through the whole thing, so we never saw that change), she has more energy, and just feels better. She has less than two months of treatment left. Her last day is planned, and we were all congratulating her. And agreeing when she said a party was in order. (She said she's gonna eat salad and fruit and drink and dance all night - downside of chemotherapy is missing out on yummy things) So everyone started talking about celebrating and all the things she could do when her treatment was completed and everyone was so happy for her. She was so happy talking about it.

Then I felt really guilty for being jealous. She gets a "cured" party. I won't get that. I know that she's going to have to deal with this for the better part of the rest of her life, the side effects of the nuke-juice they pumped into her, the fact that history of cancer means always having to be on the lookout for cancer. But she's on the mend and is believed to recover completely. And I was mad that she got to celebrate that when I don't even get to celebrate little milestones for long because they tend to come back or new things take its place.

We have another coworker out having minor foot surgery (a tendon that needs repair after a patient got rough and she fell). Gift baskets/goodies are already being planned out and collected to take to her home to keep her happy and occupied while she has to remain off work.

Again, the guilt and jealousy over the love being shown while she's injured upset me. I have never gotten that kind of thought and love and support while I was sick.

Why? Because I'm always sick. So what if I'm off for a few days again, because isn't that just always how it is? But just because I'm "always sick" doesn't mean that I don't need some love and TLC to make me feel better sometimes. I don't need to be spoiled with gifts and parties, but just a text message asking if I need anything, asking if I'm doing better, offering a joke or a "get well" to make me smile. That's all I want from time to time.

To bring that up feels very heartless. Feels very rude. Feels unfair. I hate that because I'm going to have this illness for the rest of my life, it means I get/need less love and support.

Not fair, EDS. Just not fair.


On another note, for the first time in at least 18 months (might be closer to 2 years) I made it over 30 days without seeing a single doctor. I didn't go to my primary, didn't go to the emergency department, didn't even have to make calls. Sure, there were still days I felt like hell, but I managed. I finally made a mark in the calendar for the better. But I have been to the ER since that mark passed. So, we start over. I've already got docs scheduled now, too, though. I go through it in waves: I'll see all of my docs multiple times for weeks, months trying to get things taken care of; then I'll be so sick of seeing doctors I won't go in at all unless it's emergent. I went through my "I don't wanna see anybody with an MD behind their name" thing, and now it's time to be proactive and crazy about my health again. Starting with a new GI doc at the beginning of next month. And likely a visit with the cardiologist shortly thereafter. I'm having issues managing dysautonomia symptoms. Worse than I used to. I think it's time I finally get more support and help on this one. So bring it on. My day planner is primed and ready!

Saturday, May 12, 2012

Saturday spent at work or Saturday in the ER?

I had this little itchy spot on the inside of my thigh. Since I have a dog, woods behind my house, and a wood burning stove, I assumed it was just a bug bite. But then it kept itching. A lot. Really annoying and painful itch. And it was lasting longer than a little bug bite usually would. I took a better look at it (as bendy as I am, this is still a spot that I can't see easily) and realized it looked a hell of a lot like shingles. So I called in sick and planned to go to urgent care today. Well, the urgent care clinic said they'll take any insurance, but mine will still cost me a whole lot, more than a trip to the ER (the hospital my insurance is primarily affiliated with is down the street from urgent care). So, I went to the ER. I don't like the idea of going to the ER for non-emergencies, but $75 is a hell of a lot cheaper than the unknown several hundred just to have a spot looked at. But I decided to look at it as a glass-half-full situation. I've been battling with myself for a week to go get IV fluids because I felt like crap and it was dysautonomia related and I knew IV fluids would make me feel better, but it's so expensive to go to the ER for fluids. Nonetheless, I was already headed that way, so it was gonna be a double trip.

The doc decided that my lesion is shingles, but that it's small enough and contained enough by my clothes that I don't have to miss work (which I did today because shingles is contagious and I work on an oncology floor where immune systems suck). I will still ask to be reassigned if I should happen to have chemo or neutropenic patients for the next week though; better safe than sorry.

And when I asked for fluids, the doc asked a couple questions (rather than just giving it away, because that would be irresponsible) and said he can certainly give me fluids. And Zofran, since I was due for more and anything via IV is much better.

Since I was dehydrated, I didn't have a lot of options on veins. I don't let people stick my right arm anymore because in nearly 10 years, it's only been successful 2 times. So that left my left side. But since I have EDS, that eliminated the big fat veins in the AC space because I can't hold my arm straight that long, and my wrist. But the training tech was up for the challenge (he told me afterward he likes people like me, who he actually has to work on and learn from, rather than just shooting a standard canon through a big vein). We ended up having to use the smallest adult IV they keep (22) and it went into a vein in my hand that bent slightly after it was in. But it was a single stick, and not a dreadful one either. But because of the size and location of the IV, it took a long time. And I did have to adjust my knuckles a little to help speed up the flow (luckily, not painful, just awkward, I had to keep my hand pretty still to keep the flow going strong). But by the time I was done, I felt like a much different person. I managed to eat lunch halfway through and finish it - after taking a break and coming back to it. My headache went away, I stopped peeing every 5 minutes, muscle spasms decreased, dizziness decreased greatly, the whole nine yards.

I have found a new gastroenterologist who I am seeing at the beginning of June for the first time. I'm going to bring up the fact that the only way I can properly retain any kind of fluid volume is when it's normal saline IV or massive amounts of gatorade. It's hard to eat and drink enough to do the same as the IV fluids. I really think that either doing a nissen and G-tube with the sole purpose of small "saline" (I would just mix the appropriate amount of salt water at home) boluses all day or doing a j-tube with a pump and 'saline' would make a huge difference in my dysautonomia symptoms. I always feel like a WHOLE NEW PERSON whenever I get a single liter of IV fluids. And it shouldn't be that way. I should be able to get relief from these symptoms at home, instead of relying on the ER, and then paying out the nose for it. So I'm going to make the absorption/malabsorption argument a big one when I see the doc next month.

But for now, I have the rest of the day off (though I work tomorrow so I'll have to be in bed in just a few hours), and I feel good. So I'm gonna kick back and take it easy and just enjoy that I'm taking it easy in comfort for a change.

Hope all my favorite zebras and bendies out there are doing well and enjoying the weekend. ::gentle hugs and spoons::

Thursday, May 10, 2012

Dysautonomia, thou art a bitch.

Been having dysautonomia issues again lately. Particularly in the form of tummy troubles. I've had some BP/HR issues, but those haven't been as bad as the stomach. I've been having delayed gastric emptying, reflux, bloating, constipation, pain, swallowing issues....the works. And it sucks. Megan and I had a great couple of days planned. She was going to treat me to dinner for my birthday, at Cheesecake Factory, since I've never been there. I was prepared, I brought Zofran, which I've been taking more and more of lately. And we were planning to eat dinner but then get dessert to go so that we could eat it much later.
We went to the movies, went to see Hunger Games. But the little bit of funky that I was feeling turned into a massive amount of funky a few minutes into the movie. The movement on the screen made me motion sick, and I was overheating, nauseated to the point where I actually thought I was minutes away from throwing up (it hurts SOOOO much to barf, I can't stand it, even if it does make my tummy feel better afterward), and my BP/HR were going crazy. I took Zofran but I was sure it was going to be too little too late. So I went out to concessions to get a cold drink. Leaving the theatre helped a bit because the motion sick-inducing screen was out of my line of sight. And walking/pacing has always been a great solution for nausea for me, so the walking around helped. I got a Sprite because burping helps my tummy and it's more soothing than anything else they had there. I walked around for a little bit and sipped soda (and clutched it for dear life since it was cold...helped with the overheating). I finally felt well enough to go back into the movie, but I sipped my soda the entire time and couldn't sit straight without feeling worse, so I sat forward with my elbows on my knees the whole time.

Since I still wasn't feeling fabulous, Megan and I decided to pass on Cheesecake Factory because it wouldn't have been enjoyable for me (but we're still going to go at some point soon). Instead we got me some soup and bread at Bread Co, she got a sandwich, and we went back to her place to eat and watch TV.

Went to Mission Days the next morning (very early in the morning, which didn't help). I was mostly okay through the program, but afterward, we went to lunch with another friend. I had a margarita and nachos and felt like hell afterward (more Zofran, and we drove back with the windows down to keep me cooled off). Got back to Megan's again and we were going to start our Harry Potter marathon, but neither of us had gotten much sleep, and I was still exhausted from my tummy problems, so we ended up napping on the couch instead. We're going to try Harry Potter next time.

When I got home yesterday, I didn't really eat much...tummy wasn't up for it, but I've done better today. And I'm trying to take it easy on foods today. I have to work this weekend, so I just want to get the dysautonomia under control as much as possible before then. Then I'll go back to feeling like hell. With a few days to recover. It's a vicious cycle. I work, feel like crap, recover, back to work.

I had my evaluation at work last week though, and I was eligible for a raise in June, which means I'm no longer on probation (I was on probation from sick days last year, which meant no raise, no financial support for school, no switching departments, no option to move up or take on positions of authority, etc). So I think I'm going to talk to the Human Resources department and see if there are other options for me that would keep my pay at least linear (I can't afford a decrease), less time working on my feet and tearing up my joints, still keep my benefits, and perhaps even be something that I could do more of per week and try to get back to full time, or at least add a few more hours to each paycheck. I just want to be able to pay off my bills and keep up, perhaps save a few dollars for a trip this summer (I really want to spend some time with a new friend, but she lives far away, and right now I can't afford to fly out there), be able to afford the fresher and organic foods that seem to be kinder to my gut (packaged foods pretty much equate to death right now....but fresh foods also cost more, which I hate...why should I be punished for not wanting to load my body with preservatives and fat and artificial crap).

Such is life.

But I did do a little birthday shopping last week, got some new clothes. My old clothes were just getting too tight, and that contributes to tummy pain and reflux. So I had to break down and get new stuff. I wish I could afford to go to the gym and swim, get a few pounds off (still wouldn't be enough for my old clothes, but I certainly gained a lot of weight in bad ways while I was sick before my surgery, and I would like to lose just a few of those pounds - I gained about 30, I'd like to lose 5-7). But the gyms with pools cost $20-30 more than the ones without. I can't afford that right now. It sucks. I will someday though! Determined!

That's all I have right now. I need to get some more fluids in blood pressure and heart rate are low and it's making me feel a little sluggish. (this is one of those times I really wish they would have put in the damn J-tube because it would be incredibly easy to get extra fluids that way without making myself sick trying to drink so much...I really need to find a doctor who will do that)